Clinical Trials - Native Issues

What are some American Indian / Alaska Native issues we have with clinical trials?

Many American Indians / Alaska Natives believe:

• Most clinical trials are done on us rather than other minorities. Actually we are almost never included in clinical trials.
• We are used like guinea pigs. Guinea pigs do not have a choice about taking part in a study, but we do.
• We are the frequent victims of experiments by the US government. This was true, but not likely today.
• We are over-studied with little good going back to the local community.
• What are some explanations American Indian / Alaska Native leaders have for not participating in studies?

Additional American Indian / Alaska Native cultural issues

• Cultural issues may affect the recruitment, retention and conduct of a trial
  • For example, what if the clinical trial required the patient to have a medical check up every week over a 1 month period of time and the patient lived 200 miles away from the clinic?
  • What if that month overlapped with annual tribal ceremony or holiday?
  • Such as, Sun Dance or Green Corn ceremonies?
• What if the clinical trial required eating certain nutritious foods daily?
  • But the participant could not afford or find those foods in local markets
  • Or a tribal ceremony required several days of fasting?
• What if local tribal cultural practices include taking herbal treatments recommended by the traditional Indian healer?
  • But those herbs interfered with the drugs used for cancer treatment?
• Poverty may affect compliance
  • 5 a day includes eating five servings of fruits and vegetables a day. This is costly
• Health care standards and quality treatment are decided by these trials
  • If Natives are left out of these trials …
  • We have no influence on such standards.

Ways clinical trials could be more inclusive of American Indians / Alaska Natives

• Tribal or Native Health Boards can:
  • Rank cancer within the top 5 on the Contracted Health Services list for their tribe.
  • Meet with American Indian / Alaska Native representatives, the National Cancer Institute (NCI), or Cancer. Cooperative Groups to discuss the clinical trials studies for cultural acceptability
    • The NCI is a federal agency that does more scientific cancer research than any other organization in the world. It is located in Maryland, USA.
    • Cancer Cooperative Groups are groups of healthcare providers who develop clinical trials that are carried out throughout the country.
• Tribal / IHS / Urban Indian clinics can:
  • Transport the patient and family member to the health care setting providing the clinical trial.
  • Provide housing for the patient and family member
• Call NIH clinical trials information